a vist from my daughter

Discussion in 'I have dementia' started by muriel67, Jul 13, 2015.

  1. poster

    poster Registered User

    Dec 28, 2011
    190
    I am the daughter of a mother with dementia. My mother is in a home. My mother is not that bad (she doesn't go walking the streets not knowing where she is). However I did react like Muriels daughter and could not cope with my mother as she was. I never got any real help from the dementia society and thought it didn't matter because my mother was not that bad so on her good days it was hard to believe she even had dementia.

    This weekend was pretty bad so I decided to seek some help for the first time in my life and realised that I did not know how to talk to my mother and when she spoke strangely, I took it to heart and shouted at her in defence which I know now was wrong as it only made things worse.

    I hope you sort things out.
     
  2. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    331
    Ontario canada
    I'm so glad you put that post on poster. I think it's important to realize that we know nothing about the dynamics really of Muriel and her daughter's relationship. I'm also hoping they can get it all sorted out. It really is a horrible horrible disease. My heart just aches for the both of them.
    Carole
     
  3. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,493
    Female
    Near Southampton
    TP is here to advise and support and that is what we have tried to do for Muriel here. We are never aware of the full story of any poster and can only respond with the limited information we are given, one-sided though that may be.

    I don't condemn Muriel's daughter for being frightened of the future and not wanting to become a carer for her mother and agree that with 4 children, whose ages we don't know of course, I can understand that she is probably very busy.
    However, to turn your back is something I find harder to understand.
    Compassion costs nothing and Muriel has asked for nothing more than understanding and reassurance.

    I would react exactly as she has done and removed my daughter from the SOS bracelet and sought to find accomodation independently which I think is very brave of her. That doesn't mean that her daughter will not be informed if her mother ends up in hospital, just that she isn't the first port of call. I'm sure her details will still be noted as next of kin.

    I think that maybe both she and Poster might find some help in the
    Compassionate communication advice, the link to which I'll add here later.

    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

    Poster, we can't always follow this and everyone has their bad moments but it might just help a little. Sympathy to all who are in this invidious position of trying to do the best they can in this dementia battle. x
     
  4. muriel67

    muriel67 Registered User

    Apr 10, 2014
    44
    #24 muriel67, Jul 15, 2015
    Last edited: Jul 15, 2015
    I feel I need to respond to your post,Yes some of the posts have been harsh about my daughter especially from people who don't know the situation.I said she said she wanted to walk away because she doesn't like seeing me like that.But she hasn't done yet.She was being very honest and I am glad about that,but its still very hard to hear.It made me feel I wanted to lighten her load that's why I took her name from my bracelet.I haven't told her and im not going to.The hardest part is listening to her when she goes on about me going in a home,It was heartbreaking when my mom went into a home so I cant get my head round why she thinks its funny.Also being tolds its like having another child when she has to explain things over again or I cant remember the words for things is making me very aware of the burden I am becoming to her.Thats why I am looking into outside help and extra care accommodation.My daughter has 4 boys the eldest 18 , then a 12 year old he is autistic and caring for him is very demanding.S he has a 5 year old who has intraocular albinism wich means he cant see further than 12 foot in front of himself.the last is 4 years old hes got the same as the 5 year old and also autism and cerebral palsy.As you can see my daughter has a lot on her plate and I can fully understand how hard things are for her,thats why I try not to add to her load.I have posted on here that my daughter has children with special needs and that I can understand she doesn't want to be a carer foreverI think most people who know her situation wouldn't judge her harshly.On the whole I do feel that most of the posts on here have been very supportive and im glad of that.Im hoping that given time my daughter will be able to come to terms with my diagnosis and have peace .From my experience with my mom who had dementia the first year was the hardest, realising its the long goodbye is awful.So to all who read my posts please don't judge her too harshly because she is a good person whose struggling with losing her mom gradually.:):)SORRY THIS WAS A RESPONSE TO CAROLECAS POST
     
  5. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,300
    Oh Muriel,
    Your daughter has such a lot to cope with and I am sure she is very scared that you may not be able to support her as much as she would like. As I said before, I still think it is a compliment to you that she feels able to speak to you so honestly, painful though it was to hear.

    Also, it has been said in our family, that we laugh at inapropriate moments. I know I do, when something seems shocking, surreal or to hard to think about. Hard to explain, but maybe that is why your daughter 'thought it was funny' as you described it.

    I honestly think your daughter loves you dearly and wants the best for you. She is just trying to comes to terms with the situation. She will support you in time, I think. I hope.

    Just my thoughts...
     
  6. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Muriel, I think you're a shining beacon to us. I doubt I'd feel so loving when I was so hurt and distressed.

    I can just about imagine the dreadful pressures of your daughter and why she feels so over-burdened and hopeless. She must be a very good Mum to keep picking herself up and keep on mothering her brood regardless of the overwhelming tiredness and stress she feels. No wonder you love and support her and try to ease the burdens on her.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,719
    Kent
    It`s strange how we can all criticise our own but when others agree we leap to their defence.

    I don`t think anyone was doing anything other than trying to support you Muriel, you seemed so distressed.
     
  8. muriel67

    muriel67 Registered User

    Apr 10, 2014
    44
    I will always defend my daughter because I love her and know she has a lot to cope with wich she does really well.It doesn't mean its not hurtful when she comes out with things it really shakes me up and makes me feel very sad and depressed about our situations.I came on here to get some advice from others who have walked in my shoes and in the process have to tell a bit about why im so upset.From reading others posts I realise that her reactions ,being afraid,wanting to walk away,sometimes saying things best left unsaid, are what a lot of people feel in the early stages of a loved ones diagnosis.I think some people got the idea she had already walked away but she said that's how she felt.I was upset when she said that but shes still hanging in there.thats why I feel so isolated because I don't feel I can talk to her about how I feel now.The good thing about coming on here is the support to see things from the other side and to realise what help is available so I can lighten my daughters load and get help from other sources.
     
  9. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,300
    ...because somehow we mothers feel we must appear the strong one at all times. I know what you mean, Muriel. We can't show our 'weaknesses' to our sons and daughters in case it upsets them. I always looked on my mum as the strong bedrock in my life. It was a shock to my system when that balance had to change.

    Perhaps some counselling could help you to deal with your grief? We can try to support you here, but it isn't the same as having a real life ally to hand over the tissues and give you a hug, is it? Could you ask your GP to advise you where to find someone?

    I have great admiration for you Muriel, you seem so wise and understanding...a shining beacon as someone said earlier.:)
     
  10. muriel67

    muriel67 Registered User

    Apr 10, 2014
    44
    I hadn't thought of counselling yes it might work.I think I might also stay of here until then because its all too raw at the moment.I need to be able to write on here when im not so upset and people wont get the wrong ideas from my postings.But thankyou everyone for all your help and understanding.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,719
    Kent
    I`m sorry about this muriel.

    I notice all the replies you have had so far are from people who are carers. Please stay with us so the people with dementia on Talking Point might have a chance to support you.
     
  12. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    #32 CollegeGirl, Jul 16, 2015
    Last edited: Jul 16, 2015
    I'm so sorry, Muriel, if mine was one of the posts that you felt was too critical of your daughter. From what you posted I thought your daughter was abandoning you but now I realise this is not the case. I also didn't mean to sound so holier-than-thou, a saint I definitely ain't!

    Do please keep posting if you feel able to. We (I :eek:) might not always get it right, but we do all definitely care, and we would hate to lose you from TP.

    Hoping things improve for you both and sending you warm wishes xx
     
  13. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    I'm another daughter who at times held her head in her hands and wished it 'would all go away' and I wasn't dealing with anything like the problems your daughter has with her own family.

    The best way you can help your daughter is to do what you are planning - get your affairs in order and sort out your future living arrangements well in advance. Tbh, taking responsibility for their own welfare arrangements is something ALL parents as they age should consider doing, as having to sort things out once there's a crisis is the one thing that will guarantee heaping stress and guilt on any son's or daughter's head.

    So I admire you so much for taking the initiative, Muriel. You are a fine example to us all and remember, we're here to hold your hand through the process.
     
  14. Oxy

    Oxy Registered User

    Jul 19, 2014
    955
    Muriel, you are clearly a very good mother with the full comprehension of your daughter's feelings but naturally these would cause upset by their ramifications. However as I wrote in my earlier post, it may actually be more likely that your daughter would benefit from seeing her GP. Her situation is so difficult and this could well cause her to say things that are out of character through the great amount of stress she is under. It is so understandable that you were hurt because when we ourselves are unwell we require more kindness and support. Maybe she was unable to show this at a time when you most needed it due to her turmoil. I just hope that she has a supportive partner. You have not mentioned him but if you are close to him he may be able to encourage her to seek help at a difficult time for her. Not your fault at all, but you becoming ill could just have been the straw that broke the camel's back on that day. As I said before, input from admiral nurse by phone (or in person if they exist in your area )would be best as they really understand dementia and are medically qualified. Alz soc person may come out too.
    I so hope you will be happy in your new living arrangements when you eventually move and that you all find life easier. Do use TP as a resource, that is what it is there for, especially when things appear untenable. My very best wishes.
     
  15. patsy56

    patsy56 Registered User

    Jan 14, 2015
    839
    Fife Scotland
    #35 patsy56, Jul 16, 2015
    Last edited: Jul 16, 2015
    I am not Muriel's daughter, I'm not but I am the daughter from hell.......let me explain.

    I knew my mum was going down hill and took her to her appointments, did her washing, tried to help. I did look for a CH near me , she lives an hour away. My husband has Parkinson's and is I think going down the dementia trail.

    I suggested clubs, coffee mornings, and friends suggested the Church. Answer, "Been there, done that, got the t-shirt"

    She fell, sis and I got her the alarm bracelet "Not using it"

    We got her the blister pack with her tablets, and we got the nurses to drop by daily.

    We got a care package for her, "Why do all these people keep coming in"

    I used to shout at mum, but I think it was to try and tell her, she wasn't looking after herself, yes I was confused and worried.

    After finding TP I realise my feelings are the same as other daughters. I am trying to be a better person to B and to mum, here on TP has taught me I am not alone.

    Please I am not saying, I am perfect, and I can see Muriel your side of the story, maybe I just wanted the elephant to go away.

    Sorry for my long post, but I had to reply.

    Edited as I realise some people thought I was Muriel's daughter, I am not.
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,719
    Kent
    Thank you Patsy.

    There are always two sides to every story and I`m sorry you felt you had to explain but grateful you did.

    I have cared for my mother and my husband and appreciate the difference. Caring for my mother was in addition to holding down full time employment and having family responsibilities. Caring for my husband was just me and him.

    You have a lot on your plate and I hope you will still feel supported on TP.
     
  17. patsy56

    patsy56 Registered User

    Jan 14, 2015
    839
    Fife Scotland
    Grannie, yes there is a difference, and I never had children with OH, I am a wicked stepmother:D

    I saw my dad die of cancer, and tried to help there too, but yes I feel OH needs me more than mother, and I have dropped from full time to part time work as well as dropping size 10 to a size 6.

    I have to "Take each day as it comes," a phrase mother uses all the time, but yes been Doc, got month on sick last year as I had to come to terms with her illness and the start of OH's downhill journey.
     
  18. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,493
    Female
    Near Southampton
    I wrote the above earlier and I think what you have said, Patsy, supports that comment so I am really pleased you have come here and balanced the sides out.
    I apologise absolutely if I misunderstood the situation as I, too, thought you had already walked away.
    You do indeed have a dreadfully busy and stressful life and your OH's Parkinsons isn't going to make it any easier. Of course, you have your priorities and it's pretty clear where they must lie.
    I notice you mention 'sis' but no mention was made of your having a sister, only that Muriel's didn't understand her dementia. If you do indeed have a sister, that does make a difference but perhaps you were referring to your aunt.

    Like Sylvia, both my mother and my husband had dementia. Different causes and different times and different circumstances but I do think there is a difference in both responsibility and attitude. With a spouse, I don't think there is any element of choice involved.

    It wasn't that it seemed that you opted not to be involved in a hands-on way, which I deduced from the suggestion of a care home, that I found upsetting. I can quite understand the enormous and unsustainable burden this would place on you in view of all your other responsibilities. It was the fact that Muriel felt that you might not care about the way she felt. As I said compassion costs nothing and involves only a few words and minutes. I understand completely how frightening this is for you but it just has to be worse for the person who is suffering this disease. Please, just be there for her. Not to do anything practical but just to listen and give moral support when necessary.

    I stand by my reference to the Compassionate communcation link above. It may not be relevant at the moment but many have found it helpful. Not that anybody can be patient all the time and we are all guilty of losing it sometimes but that's being human.
    We are not perfect.
    Very best wishes to you both.
    I do hope that this airing here will have helped you understand each other's point of view better.
    Perhaps my daughters and I should try it sometime! xxx
     
  19. patsy56

    patsy56 Registered User

    Jan 14, 2015
    839
    Fife Scotland
    Saffie thank you, huggs yes sis is my sister, mother's brother and his wife both died of Dementia.

    Muriel, I apologise if I hurt, it wasn't meant to, I try to love mother but it is becoming harder to do every visit........

    Enough said, we all have our crosses to bear.
     
  20. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,493
    Female
    Near Southampton
    #40 Saffie, Jul 16, 2015
    Last edited: Jul 16, 2015
    Thank you Patsy. That does make things clearer in many ways.

    Edited to say that actually, it certainly does now but for for a totally different reason.
    If you are not Muriel's daughter, then you cannot possible know that she has another daughter that could help.
     

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